As you read this, thousands of people are nervously competing for a spot on a popular television show where a limo whisks them off to a hospital for a very expensive, life-changing, appearance-altering procedure.
Then, after about six weeks of isolation they're reintroduced to their family and friends -- new and improved.
Seriously -- An Annual Celebration
Welcome to your bone marrow transplant -- your very own Extreme Makeover (minus the limo). After it's all over, you'll have a brand-new bone marrow that's likely to be much longer lasting than cosmetic surgery, plus you'll get to go to a really great party -- the annual celebration for bone marrow and stem cell transplant survivors at Memorial Sloan-Kettering.
Dr. Richard O'Reilly, head of the transplant program, addresses the group. Looking around the room, he remarks that this is the bravest group of people he's ever met. And when you think about it, of course he's right: people willing to undergo the ultimate makeover -- to take a strong enough dose of chemotherapy to destroy a diseased bone marrow and create room for a healthy new one to take hold, grow, and hopefully thrive.
It is great to be one of the survivors (this is my sixth year). I think what I like best is the combination of tuxedoed waiters serving hors d'oeuvres and the jazz trio playing in the hospital -- if only they could keep that going on the 11th floor, seven days a week.
A Perfect Match
In 1994, I was diagnosed with chronic lymphocytic leukemia/small cell lymphoma. For the purposes of translation, this meant that I had non-Hodgkin's lymphoma. I'd had a course of chemotherapy that summer and then I had a year and a half in the clear before a recurrence in the spring of 1996. I had chemo again, but this time when I finished I had a different conversation with my oncologist.
Dr. Andy Zelenetz, the chief of Memorial Sloan-Kettering's lymphoma service, told me that I had better check to see if any of my three siblings was a potential match for a bone marrow transplant and that I had six months in which to do it. It was not a question. It was not a "maybe you ought to." It was a "you have six months in which to get ready and do it."
I was incredibly lucky. My youngest brother was a perfect HLA [human leukocyte antigen] tissue match -- his bone marrow would be most likely to be accepted by my body. Still, I waited until the very end of my six months to enter the hospital for the transplant. Not a good move. (Note to new patients: whatever outside parameter your doctor offers you -- do it sooner.)
Getting Through It
The most important thing you need to know about a bone marrow or stem cell transplant is that you can get through it. You can and you will -- and so will your spouse and your family. It is hard to say who it's hardest on, but you can always argue that as the patient it's hardest on you. You have to take the chemo; you have to stay in your room for 3 to 6 weeks. But your family isn't exactly having a picnic either.
But just because you are in the hospital for a few weeks doesn't mean you can't continue with your life. You should try, as much as possible. Everyone is different, but I was able to make and take phone calls for work. In fact, I negotiated one of the best business deals of my career from my hospital bed -- I suppose I took out my frustration on being shut up in a hospital room on the guys on the other end of that deal, but they were none the wiser for it.
I also asked for, and received, an exercise bike (or at least the pedals of one) in my hospital room and I used to bicycle twice a day, looking out my room at the sunset reflected in the windows of the Rockefeller University campus across the street and on the 59th Street Bridge. You just can't lie in bed for six weeks; you wouldn't do it at home, why do it in the hospital? I mean, there isn't that much good stuff to watch on TV.
Which is not to say that your bone marrow transplant will be a day at the beach -- unless it's the kind of day where you get a really bad sunburn after being stung by a jellyfish and then get food poisoning from the sandwich you let sit out in the sun. Now, none of those things will actually happen to you during your bone marrow transplant but there will be times when you will feel like they have.
You'll be told that the chemotherapy can be nauseating -- and it is -- but there are drugs for that and I always did a lot of visualization. Whenever they would bring me the busulfan pills -- and I remember there were seven plastic capsules and I think six little white pills in each -- I always began thinking back to being on the beach in Maine with my kids (that really was a day at the beach!). They were six and four years old that summer and they had their boogie boards with them and decided we should all swim to England. I agreed but then they wanted to know if we could stop for lunch along the way. (It's always something, isn't it?) I told them that we would not be able to get any french fries en route and that put a stop to the swimming-to-England plan and we paddled back to shore. The whole thing used to put such a smile on my face, I had no thoughts about what the medicine might or might not be doing to my body.
They Really Are Out to Get You
One thing I really came to care about (no, I'm not going to get "heavy" here) was bacteria. You really do become a germaphobe -- think Woody Allen but with a very valid reason. The heavy-duty chemotherapy intended to suppress your bone marrow (notice I'm staying away from expressions like "kill off" or "destroy") also suppresses your ability to make new blood cells, among them white cells which are your disease-fighting cells. So, for a period of time in the transplant process you are very, very susceptible to infection. So much so that there comes a time when your hospital room door closes -- and believe me, it is a very dramatic, lonely moment -- and you are in isolation for several weeks. Know that this moment is coming and try to find a way to distract or pamper yourself. Try not to think of yourself as being shut in, but rather as you shutting out all the petty annoyances and inconveniences of daily life.
While in isolation you are restricted to food from the hospital's menu service. Why? Because they boil or heat the hell out of that stuff so that the hardiest bacterium couldn't survive in there even if it had the guts of Rambo. Why do you think hospital food tastes so bad? Because it's clean! In any case, between the chemo and the quality of the food, eating will not be high on your list.
At Least It Doesn't Hurt
Stem cells are "harvested" (colorful language, isn't it?) as if you were donating blood -- a tube in one arm removes blood which flows through a filter to remove stem cells and then the blood, now stem cell-free, is returned via the other arm. People who are having an autologous stem cell transplant go through this procedure, too. They "bank" their own stem cells which are then "cleaned up" and re-transfused after the heavy chemotherapy.
As for you, the actual transplant is surprisingly anti-climactic. The marrow or stem cells are dripped back into your body like a transfusion. No bells, no whistles. Just those amazing little stem cells with a great sense of direction that know how to find their way into all the crevices of your bones where marrow is made.
People always wonder how a transplant actually works and they want to know whether it's painful to donate stem cells or bone marrow. Having not been a donor I can say authoritatively, "not very painful at all." Actually, it really isn't. It takes about 30 minutes to extract bone marrow, under general anesthesia, and they do the equivalent of a bone marrow biopsy to the donor several times to get enough marrow to fill a blood transfusion bag. After donors wake up, they feel sore for a day or two, as if they'd fallen on the ice. Their bodies re-build the amount of donated marrow in two to three weeks.
Experts Who Care -- Even About the NBA
Truly, the most important part of your experience will be the people who will guide you through it: the nurses on the 11th floor and the doctors who manage your care. For a short period of time they will be like your family. I had the same two day nurses and the same two night nurses -- switching off for each other when someone had a much-deserved day off -- for my entire stay. They were extraordinary. I remember watching the NBA Playoffs with one of my night nurses. Thinking of it all these years later I can't imagine she cared about basketball in the least, but at 10 o'clock at night, as the floor grew quiet, she'd come by to take my temperature and vital signs and we'd watch a few minutes together and I did not feel alone.
In the morning, the doctors make rounds. The click of Dr. Essie Papadopoulos' heels was -- if you'll stay with me for a minute -- like the sound of an angel... if angels wore heels. I'd hear that sound every morning as she and her team of residents drew near on their morning rounds.
Dr. Jim Young is the transplant specialist I first went to when I was told I had six months to get myself onto the transplant floor. He oversaw my care when I was there and he is still the doctor I see today. But he doesn't wear heels and so his arrivals during morning rounds were a lot less dramatic but no less welcome. He and Dr. Papadopoulos guided my incredible life-saving recovery every step of the way -- and I might add that every now and then my body threw in some extra roadblocks.
Each year I see Drs. Young, Papadopoulos, and Zelenetz at the survivors' celebration and I want to tell them how grateful I am. Instead I find myself talking about adventures on that beach in Maine with my children -- now 13 and 11. I think my doctors understand what I'm trying to say.
It's Getting Better
In the six and a half years since I had my transplant, many of the procedures have changed to make the experience safer and less unpleasant for the patient. Yet, two truths remain: first, while you will come to hate the hospital food, remember that it is safe; and second, the doctors and nurses on the 11th floor will perform the most remarkable transformation for and with you: they will give you a miraculous second chance at life -- with your body free of cancer.
Now, if they could only figure out a way to pop for the limo, keep the tuxedoed waiters serving, and the band playing around the clock....
